New research models may benefit from policy modifications

On April 24, 2018, a suspect in California’s notorious Golden State Killer cases was arrested after decades of eluding the police. Using a novel forensic approach, investigators identified the suspect by first identifying his relatives using a free, online genetic database populated by individuals researching their family trees. In the wake of the case, media outlets reported privacy concerns with police access to personal genetic data generated by or shared with genealogy services. Recent data from 1,587 survey respondents, however, provide preliminary reason to question whether such concerns have been overstated. Still, limitations on police access to genetic genealogy databases in particular may be desirable for reasons other than current public demand for them.

The April 24 2018 arrest of Joseph James DeAngelo as the alleged Golden State Killer, suspected of more than a dozen murders and fifty rapes, has raised serious societal questions related to personal privacy. The break in the case came when investigators compared DNA recovered from victims and crime scenes to other DNA profiles searchable in a free genealogical database called GEDmatch. This presents a different situation from the analysis of DNA of individuals arrested or convicted of certain crimes, which has been collected in the National DNA Index System (NDIS) for forensic purposes since 1989. The search of a non-forensic database for law enforcement purposes has caught public attention, with many wondering how common such searches are, whether they are legal, and what consumers can do to protect themselves and their families from prying police eyes. Investigators are already rushing to make similar searches of GEDmatch in other cases, making ethical and legal inquiry into such use urgent.In the United States, every state, as well as the federal government, has enacted laws enumerating which convicted or arrested persons are subject to compulsory DNA sampling and inclusion in NDIS's database. The NDIS contains more than 12 million profiles, and it is regularly used to match DNA from crime scenes to identify potential suspects. It is only helpful, however, if the suspect-or a family member of the suspect-has been arrested or committed a crime and their DNA has been collected and stored.The case of the Golden State Killer is not the first instance of investigators turning to nonforensic DNA databases to generate leads. This was not even the first time investigators used genealogical DNA matches to develop and pursue a suspect in the Golden State Killer case itself. A year before investigators zeroed in on DeAngelo, they subpoenaed another genetic testing company for the name and payment information of one of its users and obtained a warrant for the man's DNA. He was not a match. Similarly, in 2014, Michael Usry found himself the target of a police investigation stemming from a partial genetic match between "This manuscript has been accepted for publication in Science. This version has not undergone final editing. Please refer to the complete version of record at https://urldefense.proofpoint.com/v2/url? u=http3A__www.sciencemag.org_&d=DwICaQ&c=ZQsKZ8oxEw0p81sqgiaRA&r=Y9KegZX8_vu5CrLdVhAzFg&m=rVh5cQa4U8 b6jjvtcZ3c4t7RE5_qmda3Nl3CySoc9Gc&s=JFNWnGT7A1yf0kHv5txDd55LqSFP817vB8XEHHIrBb0&e=. The manuscript may not be reproduced or used in any manner that does not fall within the fair use provisions of the Copyright Act without the prior, written permission of AAAS.

Although the explosive growth of direct-to-consumer (DTC) genetic testing has moderated, a substantial number of patients are choosing to undergo genetic testing outside the purview of their regular healthcare providers. Further, many industry leaders have been expanding reports to cover many more genes, as well as partnering with employers and others to expand access. This review addresses continuing concerns about DTC genetic testing quality, psychosocial impact, integration with medical practice, effects on the healthcare system, and privacy, as well as emerging concerns about third-party interpretation services and non-health-related uses such as investigative genetic genealogy. It concludes with an examination of two possible futures for DTC genetic testing: merger with traditional modes of healthcare delivery or continuation as a parallel system for patient-driven generation of health-relevant information. Each possibility is associated with distinctive questions related to value and risk. Expected final online publication date for the Annual Review of Medicine, Volume 72 is January 27, 2021. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

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The COVID-19 pandemic is taking a significant global toll on emotional well-being, but evidence of mental health impacts in the United States remains limited. In April 2020, we conducted an exploratory survey of U.S. residents to understand prevalence of and factors associated with psychological distress during the pandemic. Data collection was conducted using Qualtrics, an online survey platform, and U.S. adult respondents were recruited via Amazon's Mechanical Turk platform. Among 1,366 respondents, 42% (n = 571) reported clinically significant anxiety and 38% (n = 519) reported clinically significant depression. Factors associated with anxiety and depressive symptoms included Hispanic/Latino ethnicity; younger age; lower income; employment as or living with a health care worker-first responder; caregiver status; SARS-CoV-2 infection status; decreased frequency of engagement in healthy behaviors; and changed frequency of engagement in unhealthy behaviors. That some of these factors are associated with elevated distress during the pandemic is not yet widely appreciated and might be useful in informing management of mental health care resources.

Investigative genetic genealogy (IGG) is a new technique for identifying criminal suspects that has sparked controversy. The technique involves uploading a crime scene DNA profile to one or more genetic genealogy databases with the intention of identifying a criminal offender’s genetic relatives and, eventually, locating the offender within the family tree. IGG was used to identify the Golden State Killer in 2018 and it is now being used in connection with hundreds of cases in the USA. Yet, as more law enforcement agencies conduct IGG, the privacy implications of the technique have come under scrutiny. While these issues deserve careful attention, we are concerned that their discussion is, at times, based on misunderstandings related to how IGG is used in criminal investigations and how IGG departs from traditional investigative techniques. Here, we aim to clarify and sharpen the public debate by addressing four misconceptions about IGG. We begin with a detailed description of IGG as it is currently practiced: what it is and—just as important—what it is not. We then examine misunderstood or not widely known aspects of IGG that are potentially confusing efforts to have constructive discussions about its future. We conclude with recommendations intended to support the productivity of those discussions.

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